Help!! I've just been diagnosed with Crohn's

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JeffnSD

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After suffering from chronic diarrhea, abdominal pain, nausea and seeing 5 different GI specialists...I finally got a positive diagnosis of Crohn's disease. I'm actually happy getting this diagnosis cause I've been suffering from this for nearly 3 years. It's gotten so bad that I haven't been able to work for the last 2 years. So it was a blessing to finally be told I had Crohn's rather than all the doctors telling me I just had IBS and go see a psychiatrist.

But now I'm confused with all the information. I've read quite a few posts here and it seems a lot of people are still suffering. I was under the impression there are different kinds of meds to help us go into remission and regain our lives? Is this wrong? What are the meds that most people have had success with?

I guess I'm a little freaked out that things aren't going to change. It sounds like everyone is still experimenting with gluten-free diets, probiotics, herbal supplements, etc??? I've been doing this for the past 3 years to no avail.

~Jeff
 
It is different for everyone, I am clinically in remission just from Asacol (a first-line drug for CD.) But for others Asacol, and it's sister med Pentasa, do nothing for them. CD is a very personally specific disease. Each of us can have different symptoms and different methods of relief - some find no relief at all besides surgery. It is different for everyone and your journey will be unique to you.
 
I agree with Isla no two Crohns stories are the same. What doesn't work for one might work for another. I am using Humira right now with pretty good results and other people find that it stopped working for them. So don't give up talk to your doctor and you should find what works for you. Also I think diet is person specific too some people can eat anything others are very limited.
 
One thing that works for me when I am in a lot of pain it to take a few days and go on a liquid diet to try and clean myself out. After that I try a few things...mashed potato one night maybe with a small piece of chicken and see how I feel the next day. I slowly add different foods and yes, sometime I am in a lot of pain but then I know. .As far as meds my gi went through a lot of different one before one finally started to work but now it is not working so he will be changing it again. It is all a trial and error thing and yes it sucks that the error part may have you in a lot of pain but you learn.
 
Welcome...I am new to the disease and also had thought I could just take the meds and feel better. So far not the case. But, I still have hope it can happen. From what my GI has said it can just take time...the challenge is being patient. Hopefully your GI will find something that works for you.
 
Thanks for all your comments and support guys!! I guess I was just hoping for a miracle cure with medication. haha. I guess as I begin this medication journey I will find out. I have a lot of faith in my doctor. In fact my GI specialist is the nephew of Dr. Crohn himself who discovered "Crohns" disease in 1932. I'm so fortunate to live in the same city and be able to see him. He's in his 70s...so I hope he's seen enough cases and experienced enough to figure me out!!!

Jeff
 
your seeing his nephew? SWEET!!!! if he has any secrets then we'd all love to benefit from them:D

welcome to the forums!
 
Welcome...Everyone here is great.
It may take awhile to find your right drug combo. Just make sure you follow how the Dr. tells you to take the meds. Otherwise your body can create immunities to the meds if not taken correctly. Of course I only just find this out after nearly 20 yrs. of crohn's.

Anyway...Welcome Again:smile:
 
Welcome to the forum. The best advice I can give you to be certain you are telling your doctor everything. Don't try to minimize the symptoms. The only way he can help treat you is if he knows everything you are going through.
 
Well I have to admit he isn't the most cordial of doctors. His bedside manner is awful. But...I'm not there to be his friend...I'm there for him to figure out my health puzzle. I sometimes feel I'm telling him too much! I think its hard for a doctor to process everything. I actually printed up a page of my symptoms and what I go through each day, etc. So he can refer to that. But yes...if he gives me any grand diagnosis or cure...I will let everyone know. But as one of the posters said before...everyone's body is different. In fact today I had such a good day I went to the mall and saw a movie! I haven't done that in probably 6 months I've been so bad. :(
 
The nephew of Dr. Crohn? Wow. As far as him not seeming real interested, it's a similar refrain here.

So you're probably on prednisone? It can provide some immediate remission but you can't stay on it for more than a few months in most cases. But it is different for everyone.
 
Actually, unofficially this other doctor/surgeon, Antoni Lesniowski, documented it a few decades prior, but never really went public with the findings to the AMA like Burrill Crohn did in '32 with some cases. So yeah, Crohn still discovered it technically, but Antoni observed it "off the record" a bit. It's something I've seen a few places but I'm not sure how true it is or of too many details...Crohn actually also had a couple of colleagues helping him too, but their names escape my mind and it's late. You ever ask his nephew about his uncle?

Yeah, I would hope no GI gave you the impression there's a quick fix, but still, hold onto the relief after finally being dx'd, you're closer to relief than you were previously.
 
Active Crohn's = low quality of life. Tell them to start you on remicade and meth, studies say that's the best way if you have insurance.
 
I see the doctor on Tuesday. So I'll know more then. I do have insurance but my plan doesn't even cover Remicade. Hopefully there are some alternatives to that specific medication. I've heard some folks take Humira (?) which is on my plan. Ive heard most doctors start off with mesalamine or sulfasalazine. Dont really want to do the mesalamine cause I read the side effects are diarrhea which is my main debilitating part of this ailment. I already am on the toilet 10 times a day.

No...I've never asked my doctor about his uncle Crohn. I dont really care who discovered it. Thats the past and he's not real personable anyways. It took him to detect it in me where 5 other GI's couldn't. So I hope he knows the best way to manage it for my body.

I'm curious...what are some of the diets that you all are on? I already stay away from alcohol, dairy, caffeine, coffee and most sodas. I'll have a caffeine free diet Pepsi every now and then. But for food..what do you eat? Is it the gluten-free thing that helps? I haven't quite figured out if I have any trigger foods. Seems I go to the bathroom if I eat blandly like chicken and rice or if I eat pasta and pizza.
 
If you can try an elimination diet it can work, though its hard as all heck to figure out what specific foods trigger you. The only food I know for sure that seems a trigger for me is pork, and that was after months of fooling with my diet. I was somewhat lax with my organization skills though, no journal.

Yes Humira is the other top of the line drug beside besides Remicade. Look it up and see if you can go Meth and Humira. My point here is that studies have shown that it helps if you hit it hard the first time, instead of a slow run up as most doctors go.
 
Well to expand on the elimination diet, basically you try to add one food at a time to test what sets you off. Make sure you write down everything you eat. Also I would approach it that I would eat two servings of the test subject the first day. If no problems I would go three servings the next day. If still no problems four servings, and if that was okay I would add it to the list of foods that are acceptable.

The hard part maybe that if you have a slight stricture high fiber foods can give you a false positive, giving you problems because you have narrowed intestines instead of causing inflammation. And I would think you need about 3 weeks clear of all symptoms between trying foods, that way any residual inflammation doesn't cause you any false positives. I know with pork, because so much of it is digested early in the intestine took a while before it would cause me a problem.

Though after all that I've read that once people get the diet down they can achieve complete remission, even adding back foods that were eliminated after ten years or so. And on the other hand I've read about people getting 15 years of remission after surgery as well. And have read about tons of people doing okay with the SCD, specific carbohydrate diet, and tons of people who could never figure their diet out.

Methinks you have to be hyper vigilant and diligent to go the diet route. Pork is in gelatin and gravy often.
 
Geez...this diet thing sounds complicated and frustrating. I've tried a few things..but what affects me one day...doesn't the next. I was eating just rice, chicken and bananas for 2 weeks and still had the runs. I got to the point where I just said...I might as well eat the stuff I want if I'm still gonna have bathroom problems no matter what.

You mentioned Remicade and meth? What do you mean by meth? What is the "meth" stand for?
 
Methotrexate is quite nasty stuff, I'd go on that only more of a last resort if some others first don't work, it's up there even past Imuran in some ways, not pleasant sides/risks. Just starting out I don't really know why one would go straight to MTX (Methotrexate)....

I'm not sure where you're from Abstract, but if one were to use the term "Meth" in most areas of the US, it has a whole other meaning not really related to medical relief.
 
Hah! Maybe Methamphetamine is the miracle cure we've all been looking for!

I almost ended up on Methotrexate. It's usually the backup drug if you problems with Azathioprine.
 
Thanks for the clarification on "Meth". I knew it must have been short for something else. haha.

I've been reading about all the medications available and they really freak me out with possible side effects etc. I never knew all the bad things that could happen. I think the scary thing is the immune suppressant drugs. Bascially shutting down the immune system would leave to your body not being able to fight bacteria, viruses, colds, or worse things like cancer or whatever off. Just frightening.

I was happy to get this diagnosis but now I'm more scared than anything. Has anyone had luck with herbal remedies like garlic or fish oil to reduce inflammation?
 
Hey Pen,

I never knew that about garlic. I guess that's a bad remedy for me. The funny thing about my Crohn's is...the only thing I suffer from is diarrhea. Everything else that are typical symptoms...I dont have. I have occasional abdominal cramps before going to the bathroom but once I do they're gone.

What were some of your symptoms or anyone else reading this? What do you guys mainly suffer from?
 
Have they told you where your disease is located? Diarrhea is more a large intestine thing, I think. When my disease first started I would have diarrhea, but not that bad. After about of year the diarrhea went away and the only symptom I had was every few days I would get cramps that would put me out of commission for two days at a time. Then it was near constant cramps.

If you have IBD and just diarrhea I think that is a good thing, probably means you do not have any narrowing. I would hit the drugs.
 
The upper GI's I've had shows no narrowing and the inflammation is in my ileum..which I think its mostly in my small intestines where the cameras cant get to. Last colonscopy showed that my colon was fine. I do have chronic diarrhea...so its been such a challenge. I'll do whatever the doc tells me to.
 
Hi and welcome. Yup - everyone is different when it comes to symptoms and to reactions to medications.
My main symptom is diarreah too, frequency and urgency.
When I was first diagnosed, I was on sulfasalazine, and I was in remission for a few years. Now I am on Humira, and had a great remission after about a year of a bad flare, but the remission only lasted 4 months. Now I am pn prednison and feeling a bit better.
It's hard to find what works for you food wise. I have to avoid beans onions popcorn and apple cider for sure, but some days I can eat an orange, and some days I can't. Gluten free didn't seem to help me. I just started a low residue diet (google it) and it is seeming to help a lot. But if rice and bananas isn't helping you, that might not work.

Did I miss it? Are you on any meds yet?
 
I mainly suffer from mild diarrhea....3-4 times a day. Not really an urgency with it though, might be because I don't have anything going on in the rectum, just the colon. I get night sweats, abdominal cramping, acidy feelings, sometimes a stabbing pain on the lower right side, dry skin, mild hair loss (I think that is from the Asacol), difficulty eating, sometimes mild nausea (not often though-sometimes comes from painful cramping). My cramping isn't all day it is intermittent, but extremely painful when they come on. Thank goodness they only last a few minutes at a time when they do. I do get fatigue but I think that is mostly due to my struggle with keeping weight on. Seems I get cramping when I do anything physically for a period of time...like vacuuming the house the other day made me feel ill!
 
Anyone who says diarrhea isn't too bad hasn't had severe urgency problems with 20-30 times a day of unstoppable diarrhea, your ass becomes a fecal faucet without an off switch. It ain't fun, and hurts quite a bit from the "traffic".

Fatigue is also one of my worst issues, and some joint stiffness...
 
Its been a few weeks since I've been on the forum. I have started with cipro, pentasa and entocort. Not sure if anything is really working. I was hoping for a miracle and wanted my normal bowel habits to return. But I fear that day will never happen. I've only been on these drugs a week. Not sure how long it will take or if I will see any improvement. There might be a slight improvement in my bowel habits..but the side effects of these drugs are harsh.
 

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